Our story starts like any other. Boy meets girl. Boy and girl fall in love. Boy and girl get married. Boy and girl start a family. We had often commented about how perfect was our little family: Mom, dad, baby, dog. And then one day our whole world changed.

Pregnancy wasn’t easy for me. I had all day sickness which lasted until our son was born. I had preeclampsia which put me on bedrest 9 weeks before our due date. I was huge, uncomfortable and immobile. Finally the day came to induce labor. The waiting was over. Cole Daniel Webb was born on August 13, 2002. Cole came into the world and our lives changed. We just didn’t know how much yet.

Cole and I were given a clean bill of health and sent home two days after he was born. After we were home we had a minor case of jaundice, but other then that everything was perfect. Cole was an angel. He never cried. Everyone who saw him would comment on what a good baby we had. We couldn’t believe how lucky we were.

When Cole was six weeks old our lives changed again. Cole had thrush in his mouth, very common for babies. One day he cried and cried, something he never did. “My baby doesn’t cry,“ I told the doctor. We knew something was wrong. We just didn’t know what. We took him to the doctor. They discovered that Cole had lost all of his reflexes. A very “floppy” baby they said. They asked if he had always been this way. Of course not. Not our baby. Our baby wasn’t floppy, our baby was perfect. Cole was admitted into the hospital and tests were run. There were two possibilities, one offered hope and one was hopeless. That night my family prayed. We prayed for a miracle. We prayed for mercy. We prayed that my son, my beautiful son would be all right.

The next day our fears were confirmed. They thought Cole had a neuromuscular disease called Spinal Muscular Atrophy, Type 1 (SMA). We had a disabled child. When I first heard this, the worst thing I could think of was a wheel chair. My child, my perfect child would have to spend his life in a wheel chair. Then the statistics came. Spinal muscular atrophy is the number one genetic killer of children under two. Eighty percent of children with type 1 die before the age of one and ninety percent before the age of two. There is no treatment. There is no cure. Cole would never have the muscles to walk, crawl, sit or even hold his head up on his own. Eventually he would lose his ability to swallow and to breathe on his own. We were to take our little baby home and enjoy him while he was still here. We were to take our baby home to die.

“This can’t be happening!” I cried. I had never even heard of this disease. Why hadn’t I ever heard of this disease. So many questions, never enough answers.

We learned quickly more about SMA then we ever wanted to know. We learned statistics like both parents must carry the gene for a child to have SMA. We learned that 1 in 40 carry the recessive gene. We learned that we have a 1 in 4 chance of having another child with SMA with future pregnancies. We learned about protocols, levels of care, machines for many different things, all of which may assist our son temporarily but never escape the fact that SMA is a terminal illness. We are faced with a lot of decisions. Decisions new parents should never have to make for their child. We should be deciding things like which outfit should we wear to the park, or does he really need a hat today. Instead, we have to decide, should we allow a breathing machine when it gets just to hard.

Thus continues our journey with SMA. Our lives changed in a minute. Our lives are very different. They are much slower paced. They are minute to minute, instead of day to day. We cherish each minute we have with our son as if it is our last. We know that we have a hard road ahead, but we face it together, with our son. This will not be an easy road to travel, but we hope we have the strength to make wise decisions. Our son is truly an angel here on earth. Cole is only very little but so far but has touched more lives then many people who live to be very old. He is truly a gift from God.

I, like so many others, had never heard of this disease, SMA. But if this could happen to my family, it could happen to any family. So many little children’s lives hang in the balance as they wait for a cure or a way to manage this awful disease. I have often said, “If only someone famous had a child, a niece or a someone close to them that had SMA. If only there was a way to raise awareness about this disease. Parkinson’s disease has Michael J. Fox, spinal cord injury has Christopher Reeves." There is no famous spokesperson for SMA. There needs to be. The lives of thousands of children depend on it.

I guess everything happens for a reason and there is always a lesson to be learned. Slow down. Live for the minute. Cherish your family, your friends, your children. You never know when they might be taken from you.


Cole was baptized at St. John's Hospital in PICU

Kristin and Dan with Deacon Paul Stackel

Mom and Dad with Godparents

Shannon Munn, Michelle Newberry and Suzanne Linhardt

Kristin with the sweet little angel